“If you’re a sibling of a child with a rare disease, there’s so much going on — there’s a lot to talk about,” said Bigelow, whose 9-year-old daughter, Tess, has USP7, a disorder marked by a gene mutation that’s been diagnosed in only 52 people worldwide. Lucas, son of the festival’s other co-founder, Daniel DeFabio, has Menkes syndrome, which affects only 1 in 10,000 newborns.

Bigelow, who’s also chairman of the Foundation for USP7 Related Diseases, said in a phone interview that he and DeFabio are delighted that several entries in the 2019 film festival will deal with subjects, such as siblings, that have not been covered before.

Some filmmakers in his year’s entries also took different storytelling approaches than in the inaugural 30-film festival in Boston in 2017. Experimentation indicates the festival is maturing.

A festival poster promotes “Ian” by director Abel Goldfarb.

In all, 54 films will be shown Nov. 9–10 at the University of California-San Francisco’s Mission Bay Conference Center. Ticket information will be available in mid-September on the festival’s website and Facebook page. The full film lineup is here.

Making room for every rare disease

Siblings whose parents devote most of their time to a sick child can feel jealous or neglected, according to the Seattle-based Sibling Support Project. They may also feel a range of other emotions, including the guilt of being healthy while a brother or sister is not.

To underscore their belief that each of the world’s 7,000 or so rare diseases deserved its own film, Bigelow and DeFabio put word out that they would produce one about a disorder that had yet to be shot — and called for proposals.

The family they chose for the film that would become “Unconditional” has a son with the ultra-rare disorder PACS1.

“We didn’t go in thinking about the sibling angle, but that’s the direction Jon went in, and it was really eye-opening,” Bigelow said.

Lord, executive director of the Courageous Parents Network, lost her daughter, Cameron, to Tay-Sachs disease. She interviewed a number of rare-disease patients’ brothers and sisters on-camera. The idea was to “give space for those siblings to tell their stories,” Bigelow said.

A typical rare disease film starts with parents explaining that they knew something was wrong with their child but did not know what, cuts to a doctor describing symptoms and a diagnosis, and ends with patents making a call to action — such as asking viewers to spread the word about the disorder or make a donation, Bigelow said.

One director who took a different approach this year was Dutch filmmaker Charlotte Driessen, who focused on how a rare disease brought a family together. Her film, “Kuluut,” is about a cousin with Bohring-Opitz syndrome.

Bigelow said the question Driessen posed was one “that all us rare disease families wrestle with every day: How do I stay upbeat” in the face of never-ending challenges?

Celebrating ‘inchstones’

Another film with an encouraging approach this year is Richard Krisher’s “Hope for Haley,” which celebrates the tiny triumphs of a girl with Bosch-Boonstra-Schaaf optic atrophy syndrome. Doctors describe the various developmental stages that healthy children go through as milestones. Krisher’s film rejoices over Haley’s “inchstones.”

Lucas DeFabio flashes a smile at the first rare disease festival in Boston in 2017. (Photo courtesy of Daniel DeFabio)

Hal Foster is a veteran journalist at the Los Angeles Times and other news organizations in the United States and Japan, and a longtime journalism professor.
In addition to the LA Times, he worked at the Portland Oregonian and the Seattle Post-Intelligencer, was executive editor of Pacific Stars & Stripes in Tokyo, and wrote about the war in Ukraine for USA Today.
He has a Ph.D. in journalism from the University of North Carolina, and has taught in the United States, Kazakhstan and Ukraine, where he was a Fulbright scholar.

Hal Foster is a veteran journalist at the Los Angeles Times and other news organizations in the United States and Japan, and a longtime journalism professor.
In addition to the LA Times, he worked at the Portland Oregonian and the Seattle Post-Intelligencer, was executive editor of Pacific Stars & Stripes in Tokyo, and wrote about the war in Ukraine for USA Today.
He has a Ph.D. in journalism from the University of North Carolina, and has taught in the United States, Kazakhstan and Ukraine, where he was a Fulbright scholar.

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